Tuesday, October 30, 2012

A Brief History of Down syndrome, Part 6: From Eugenics to Extermination

With the popularity of eugenic theories, the segregation and institutionalization of the differently abled and general public vilification, a fertile ground had been prepared for what came next.

A Call for Euthanasia

Many countries followed America's eugenics movement and imitated it's legislation. In countries such as France, Belgium, Sweden, England and Germany, eugenic principles were introduced into everyday life. Many US states had passed sterilization laws, Indiana being the first in 1907.

The 1912 International Eugenics Congress featured a paper called "Preliminary Report of the Committee of the Eugenic Section of the
American Breeders' Association to Study and to Report on the Best
Practical Means for Cutting Off the Defective Germ-Plasm in the Human
Population", in which ten solutions were put forth to deal with the "socially unfit". They were, in order: Life segregation (or segregation during the reproductive period), Sterilization, Restrictive Marriage laws and customs, Eugenic Education of the public and of prospective marriage mates, Systems of matings purporting to remove defective traits, General environmental betterment, Polygamy, Euthanasia, Neo-Malthusian doctrine, artificial interference to prevent conception and Laissez-faire. An 1918 Eugenics Textbook "Applied Eugenics" by Paul Popenoe and Roswell H. Johnson, listed many suggestions as well, among which:

"... the first method which presents itself is execution. This has been used since the beginning of the race, very probably, although rarely with a distinct understanding of its eugenic effect; and its value in keeping up the standard of the race should not be underestimated."

American eugenicists felt that American society was not ready yet to implement organized euthanasia, however many institutions and physicians within employed their own methods. Passive methods included allowing infants to starve to death (such as famed MD and wanna-be-movie star Harry J Haiselden) and withholding treatment. One large institution in Illinois however, fed it's patients tuberculosis infected milk believing that the genetically superior inmates would have immunity. That particular institution, not surprisingly, had a 30 to 40 percent death rate per year. Sterilization remained the most popular method; in the first year of California's sterilization legislation for example, 9,782 people were sterilized. Most of these were women.

Charles Davenport, author of Eugenics, The Science of Human Improvement by Better Breeding and one of the creators of the Eugenics Record Office (with funding from the estate of railroad baron E. H. Harriman)
was particularly close with his German colleagues; even after America
was in the grips of the Great Depression, American charities such as the
Carnegie Institute and Rockefeller Foundation continued to fund
German eugenics research. However, the eugenics world continued to watch closely the American "accomplishments" of "biological courts", involuntary sterilization, segregation, detention, propaganda, perpetuating of pseudo-science and the ongoing discussion of euthanasia.
In 1924, an imprisoned corporal of the German Army began to study eugenic writings, including those of Davenport, Popenoe, Leon Witney and Madison Grant, who blamed the corruption of the Nordic ideal on Jews, Slavs, Afro-Americans and many others who were not blonde or blue eyed. In his book The Passing of the Great Race or The Racial Bias of European History, Grant wrote:

"Mistaken regard for what are believed to be divine laws and a sentimental belief in the sanctity of human life, tend to prevent both the elimination of defective infants and the sterilization of such adults as are themselves of no value to the community. The laws of nature require the obliteration of the unfit, and human life is valuable only when it is of use to the community or race."

The young corporal, Adolf Hitler, went on to write fan mail to both Whitney and Grant. Hitler's letter to Grant thanked him for his book and referred to it as "my bible". In his own book, Mein Kampf, published shortly thereafter, Hitler echoed his eugenics heroes with the following call for euthanasia:

"The demand that defective people be prevented from propagating equally defective offspring is a demand of the clearest reason and if systematically executed represents the most humane act of mankind. It will spare millions of unfortunates undeserved sufferings, and consequently will lead to a rising improvement of health as a whole."

He also references the United States frequently, including his his admiration of restricting immigration. His keen interest in American eugenics legislation is reflected in this comment to a comrade;

"...it is possible to a large extent to prevent unhealthy and severely handicapped beings from coming into the world. I have studied with interest the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value or be injurious to the racial stock."

Adolf Hitler came to power on January 30, 1933. For the first 10 years of the 12 year Reich, eugenicists welcomed his proposed fulfillment of their tenets of identification, segregation, sterilization, eugenic courts and euthanasia. In July of 1933, Germany passed the "Law for the Prevention of Heriditarily Diseased Offspring". This law provided legal grounds for the sterilization of people deemed by a court hearing to be "unfit". This law provided that any person with a hereditary disease could be sterilized if there was a high probability of it being passed on to future generations. Those listed included "Congenital Mental Deficiency" (such as Down syndrome), schizophrenia, bipolar disorder, epilepsy, Huntington's chorea, blindness, deafness, any severe deformity and those with severe alcoholism. In the general public, the notion of the "useless eater" was perpetuated.

In 1934, the superintendent of Virgina's Western State Hospital complained in the local paper "The Germans are beating us at their own game". For years, Nazi doctors would continue to routinely consult with eugenicists across America.

Extermination and Aktion T4

The first incidence of state performed euthanasia in Germany was known as the "Child K" case. Hitler was approached by the parents of a "deformed" child and asked his permission to allow the child to be put to death. After consulting with his personal physician and chancellor, Hitler granted the child's doctor the ability to euthanize the child.

This poster proclaims “Sterilization is liberation, nota punishment.” and asks “Who would want to beresponsible for this?” and features three children
with disabilities. Photo courtesy of Calvin College

By August 18th 1939, Hitler had created the Reich Committee for the Scientific Registering of Serious Hereditary and Congenital Illnesses (Reichsausschuss zur wissenschaftlichen Erfassung erb- und anlagebedingter schwerer Leiden) which required mandatory registration of all births of developmentally delayed and handicapped children by doctors and midwives. Children up to three years of age had to be reported to the offices of the Reich Health Ministry. Code named Aktion T4, Hitler ordered the "mercy killing" of all deemed "life unworthy of life"; this plan focused initially on newborns and young children. The program was managed by Hitler's personal physician, Karl Brandt and the chief of Hitler's private chancellery, Philipp Bouler (the same two whose counsel he sought with Child K). To be included in this program were those with "idiocy and mongolism" (Down syndrome), those with blindness and deafness, microcephaly, hydrocephalus, absence of limbs, mid line defects of the head and spine and paralysis (such as cerebral palsy). The decision to end a child's life was based on the results of a questionnaire. No medical examination took place or records were consulted. Three "medical experts" placed a red + or a blue - on a form marked "treatment". A minus sign represented a decision by an "expert" to not kill the child. Three plus signs meant the issue of a euthanasia warrant and transfer to a "Children's Specialty Department". A unanimous decision was required; in the event of a split decision, the child was "observed" for a period of time and another attempt would be made to achieve a consensus.

"Life unworthy of life"

These children were sent to one of six facilities where they were killed by drugs or by starvation. It is belived that 8,000 children were to lose their lives this way. In October of the same year, this decree was extended to include older children and adults. Hitler backdated his declaration to September first and increased the power of

"the authority
of certain physicians to be designated by name in such manner that persons
who, according to human judgment, are incurable can, upon a most careful
diagnosis of their condition of sickness, be accorded a mercy death."

This would not only dispose of the "useless eaters" but also free up beds in hospitals for wounded Nazi soldiers. Questionnaires were sent to institutions for the mentally ill, chronically ill and hospitals. Patients were required to be reported if they had schizophrenia, epilepsy, dementia, paralysis, syphillis, developmental delays, encephalitis, neurological conditions, had been in hospital or institutionalized for 5 years or more, was criminally insane, was a foreigner or was Jewish, African-American or Gypsy.

There were four main divisions that aided the program that were created in 1939. The first, the Reichsarbeitsgemeinschaft Heil- und Pflegeanstalten (RAG) was responsible for the distribution and return of the registration forms to the institutions. The completed forms were forwarded to the "experts" who decided the patients fate. The Gemeinnützige Krankentransport GmbH" (Gekrat) was charged with transporting the patients via Gekrat buses to the killing centres, while the Gemeinnützige Stiftung für Anstaltspflege" (Stiftung) created extermination sites by renting spaces, setting up the equipment, hiring staff and managing their budgets. Finally the Zentralverrechnungsstelle Heil- und Pflegeanstalten" (ZVST) served as the central clearing office. The main office was located in Berlin on Tiergartenstraße 4, which gave the program it's name of "T4". Physicians and medical assistants were eager to assist with this programme as the salaries were made very attractive.

Six main euthenasia sites were created across Germany and Austria. In January 1940, Brandenburg (near Berlin), Grafeneck (near Stuttgart) and Hartheim (near Linz, Austria) were established; both Brandenburg and Grafeneck ceased functioning (officially) between September and December of the same year. Sonnenstin/Pirna (near Dresden) opened in April of 1940 and Bernberg (near Magdeburg) was established in September. The last to open was Hadamar (near Koblenz) which opened in January the following year (and closed that August). Bernburg ceased operation in April 1943, while Sonnenstein/Pirna ended in August 1943. Hartheim was the last to cease it's operation, which it did officially in December of 1944. The Zwischenanstalten were intermediate stops between the patients institution of origin and the killing centres. They also managed the capacity of the centres and were tasked with 'cover up' for inquiring relatives. It was at Brandenburg, a converted prison, that the first Nazi gas exterminations took place. The T4 victims were gassed in chambers disguised as showers and their remains burned in giant ovens. Families were told that the victims had died of various illnesses including pneumonia or heart failure. They would each recieve an urn contianing mixed ashes. The routine deception and gassing/cremation would be used again, only on a much larger scale.

The billowing chimney at Hadamar. Ashes with
human hair would rain down upon the townspeople.
Courtesy of H. E. A. R. T.

Although it was a top secret operation, Aktion T4 became difficult to hide, especially with the dwindiling numbers of the mentally or physically disabled and mentally ill. Also, the thick, constant, maloderous plumes of smoke from the crematoriums was also difficult to conceal. It is rumoured that at Haldamar, a former hospital for the mentally ill, children would watch the incoming buses and taunt the inhabitants with "here are some more to be gassed". Ashes containing human hair would rain down on the town. Those aware of the goings-on at the six centers were either in favour of the program or completely silenced by fear.

The following three testimonials speak volumes about the killing centres (in this case, Hadamar):

“After doors were closed, the air was sucked out of the gas chamber through a ventilator by the same doctor who carried out the earlier `examination.’ Then for about ten minutes, carbon monoxide was let in [by that doctor] and its effect observed through a small window. As soon as he thought that those shut in had died, he had the gas chamber emptied. First fresh air was introduced through the ventilator, and the gas was forced out. From the beginning of the gassing until the reopening of the gas chamber took about one hour. The corpses that were to be dissected were removed to a special room. However, the great majority of corpses were immediately taken to the ovens and burned there.”

"Through it I saw 40-45 men who were pressed together in the next room and were now slowly dying. Some lay on the ground, others had slumped down, many had their mouths open as if they could not get any more air. The form of death was so painful that one cannot talk of a humane killing, especially since many of the dead men may have had moments of clarity. I watched the process for about 2-3 minutes and then left because I could no longer bear to look and felt sick.”

“Did I ever watch a gassing? Dear God, unfortunately, yes. And it was all due to my curiosity.... Downstairs on the left was a short pathway, and there I looked through the window.... In the chamber there were patients, naked people, some semi-collapsed, others with their mouths terribly wide open, their chests heaving. I saw that, I have never seen anything more gruesome. I turned away, went up the steps, upstairs was a toilet. I vomited everything I had eaten. This pursued me days on end.... Looking into the chamber, I could not imagine that this was completely without pain. Of course, I am a layman and this is just my opinion. A few were lying on the ground. The spines of all the naked people protruded. Some sat on the bench with their mouth wide open, their eyes wide open, and breathing with difficulty.”

A Catholic Bishop in Münster, named Clemens von Galen, delivered a sermon on August 3, 1941 which denounced Aktion T4 as murder. The Nazi party was publicly condemned and the faithful encouraged to withdraw from the party due to their "ungodly" policies. Hitler officially suspended the program 20 days later and in retaliation, beheaded three priests. At that point, over 70 000 lives had been ended. Although it had officially been stopped, it continued quietly in the background, especially in the hospitals of conqured territories and for those that remained in the institutions. Instead of gas, patients were poisoned or starved to death. Physicians were encouraged to err on the side of death when considering such an action.

The gas chambers used in the euthanasia centres were a testing ground; the Nazi party used the Aktion T4 experience to aid in the construction of the death camps in places such as Auschwitz and Treblinka. In fact, many SS officers that participated in the killing centres would go on to command in the camps. Although officially abandoned, Aktion T4 was still considered a "success" and became the opening chapter in what would become the Holocaust.

Meanwhile, in the Allied countries, increasing numbers of institutional workers were being drafted, leaving the already overcrowded conditions even more destitute. Although the horrors of the camps and Aktion T4 were exposed after the war, people continued to be sterilized against their will, long after eugenics was abandoned as a "science". In parts of Canada for example, this would continue well into the 1970's.

[Next time: Abandonment and Abuse]

Black, Edwin. War Against the Weak: Eugenics and America's Campaign to Create a Master Race. New York: Four Walls Eight Windows, 2003. Print.

"Disability History Exhibit." Disability History Panels. Alaska
Department of Health and Social Services, n.d. Web.
<http://www.hss.state.ak.us/gcdse/history/HTML_Content_Main.htm>.

Grant, Madison. The Passing of the Great Race or The Racial Bias of European History. New York: Charles Scribner's Sons, 1916. Print.

Hitler, Adolf. Mein Kampf. Germany: Eher Verlag, 1925. Print.

Lifton, Robert J. The Nazi Doctors: Medical Killing and the Psychology of Genocide. New York: Basic, 2000. The Holocaust History Project. Web.

Van Wagenen, Bleeker, "Preliminary Report of the Committee of the Eugenic Section of the American Breeders' Association to Study and to Report on the Best Practical Means for Cutting Off the Defective Germ-Plasm in the Human Population" (2009). College of Law Faculty Publications. Paper 74. <http://digitalarchive.gsu.edu/col_facpub/74>

10 comments
:

Thank you so much for taking the time to wrote your 31 for 21 series: you did a great job, all posts are very informative. The last ones are heartbreaking, but you're right, we shouldn't forget what happened.

I've only read one book on the T4 Aktion, it was a merciless endeavor. I had never see this, though "Patients were required to be reported if they had schizophrenia, epilepsy, dementia, paralysis, syphillis, developmental delays, encephalitis, neurological conditions, had been in hospital or institutionalized for 5 years or more, was criminally insane, was a foreigner or was Jewish, African-American or Gypsy."

I have a friend who is an African American writer with no love lost for Charles Darwin (he saw whites as vastly superior to blacks, and was quite ethnocentric), and the only other person I've known to be aware of the T-4 Aktion. I only came across it when visiting the Holocaust Museum. My degree in special ed, my son being a little developmentally delayed...I just thought, "Hmm" and asked for a book precisely on that.

What I'm saying is...I don't think most people understand that Hitlers "killing solution" and practice on it, began with Baby Knauer.

Agreed. I felt it had to be told. Numerous sources (some of which I've listed here) have explored it in print here and there, but not in this readily shareable format.

I don't have a lot of love for Charles Darwin either. His youngest son probably had DS which is one of life's greatest ironies. His fondness towards the baby and obvious grief when he died does however endear him to me a bit.

I have read some of this over the years but to read it all in one sitting....wow! So emotional. I can't imagine the emotional rollercoaster ride of doing all this research. Thank you for such a great source of information. We need to know this so as never to repeat. Call me paranoid but this is exactly why I am not a fan of putting my child on any registry for research purposes or for changing the preferred term to T21 (T4)

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna